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Thursday, October 20, 2011

The Perks of Down Syndrome

Whether you find out pre-natally or post-natally that your baby has Down syndrome the first things you will be told are all from a clinical/medical standpoint. Most likely it'll be a doctor or geneticist who will talk to you about what Down syndrome "means" and then you'll probably get on the internet when you get home and research, research, research. Most of the information will still be of a clinical/medical variety.

You'll be told about the characteristics, delays, and potential medical issues.

Your baby will probably be described like this:
- the most common type of genetic defect/disorder
- chromosomal abnormality
- low muscle/tone (described as 'floppy')
- low set ears, some ears have a fold
- curved pinkies
- facial abnormalities
- small mouth
- tongue protrusion
- high palate
- flat nasal bridge
- flat back of the head
- small nasal passages
- upward slant of the eyes
- epicanthal folds
- small/short/stubby fingers
- extra space between first/second toes (sandal gap)
- teeth may come in late and out of order
- teeth may be small, unusual shape, out of place, missing, razor-sharp
- chest might be funnel shaped or pigeon breasted
- short in height


Potential Medical Problems/Other Issues
- slow to gain weight
- trouble breastfeeding
- hearing loss
- vision problems
- developmental delays in gross/fine motor, speech, cognition
- intellectual disability (or mental r*tardation)
- potential for obesity
- early onset of dementia or Alzheimer's disease
- shorter life span
- various congenital heart defects
- feeding issues
- gastrointestinal problems (duodenal atresia, imperforate anus, pyloric stenosis, tracheo-esophageal fistual, Hirschprung's disease)
- increased chance for having Celiac disease
- increased chance for having leukemia
- respiratory problems
- sleep apnea
- thyroid problems
- atlantoaxial instability
- seizures

Whew! That's a lot of information to take in all at once about your baby ... a baby whom you haven't even had the chance to get to know yet.

Please remember every child with Down syndrome is not going to have everything on those lists either.

But can you imagine leaving the hospital, or doctor's office, with all that info? It all sounds so very depressing and negative doesn't it?

What if, in addition to all the clinical/medical descriptions of Down syndrome they also give you another list?

What if someone actually said ... "Having said all that ... there are actually some PERKS to having Down syndrome! Yes, perks!"

What are some of these perks? (Many of these apply to special needs in general, not just specific to Down syndrome. Some of these are tongue-in-cheek as well.) And I don't mean the typical perks you hear about 'life lessons learned' such as learning to be more patient, unconditional love, your child will teach you so much ... not those kind of perks.

Perks of having a child with Down syndrome (or special needs)

- You learn how to speak in a whole new language; the language of acronyms. DS, T21, IFSP, IEP, OT, PT, ST, DT, DD, ID, AFO, AAI, NDSS, NDSC, NADS, LRE, NCLB, FAPE
- You might learn sign language; which you may, or may not, have done if your child didn't have Ds.
- You'll have a whole team working together to create an IFSP just for your child. Your child will have individual attention and 'fun' therapies to work on development.
- This will later turn in to a whole team of people working together on your child's IEP. They get to have all these people concerned about their education and making sure they are getting what they need to succeed in school.
- People are more apt to forgive your child's behavior because, hey! They have Ds and don't know any better!
- When you visit Disney and other amusement parks you can get a special needs pass and you won't have to wait in the long lines for all of the rides (How come they don't tell you THAT in the hospital?!)
- Your child can get the The National Parks Access Pass - a free lifetime pass that allows entry to recreation sites managed by 5 federal agencies (and allows free entry for all those in the same vehicle, or up to 3 adults on per-person entry fees.)
- There are churches that provide free respite care for kids w/special needs and their siblings
- You might find places that offer free times for families w/special needs (for us locally there is the Children's Museum of the Lowcountry that once a month opens 2 hrs early for free for families w/special needs only;  Monkey Joe's has a similar program as well.)
- You will have a new appreciation for what it takes to reach all those wonderful milestones.
- Your child has a day that is internationally recognized as World Down Syndrome Day (Mar 21)
- There is a whole month devoted to awareness of Down syndrome (Oct!)
- There are awareness walks that happen all across the country just for Down syndrome!
- There are local and national support groups for Down syndrome.
- You can attend national conventions about Down syndrome which end up feeling like a big family reunion.
- You will join a secret club. You'll see other families with a child with Ds and you'll make eye contact, smile, and discover the instant connection.
- You will discover a whole new community; online and 'in-person.' People whose paths you probably wouldn't have crossed otherwise will become your closest friends.

Added from comments:
- apply for the Katie Beckett Medicaid Waiver to get financial help for any medical or therapy needs
- better than all of these are the hugs

Please feel free to add to this list by leaving a comment on any other 'perks' to having a child with Down syndrome/special needs!

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9 comments:

Bailey's Leaf said...

I would rather folks be given the good list rather than the crappy, nothing-on-here-is-happy, list.

Thanks for educating all of us!

Mom24 said...

Really, really good post Michelle. Great job.

Christina said...

I love this post Michelle, linking to it in a post I am oding today :)

Megan and family said...

Great post, Michelle! Another perk I would add is the chance to apply for the Katie Beckett Medicaid Waiver to get financial help for any medical or therapy needs. It has been wonderful to be able get everything we need to help Gwyneth reach her highest potential without worrying about the cost. :)

Andi @ BringingtheSunshine.com said...

Great post! I've been following you for awhile but found this post today because of the blog hop. I'll definitely be sharing this one everywhere I know how to share. :)

Jenny said...

I'm here from the blog hop...I LOVED this post!! I will never forget the day my husband and I sat in a room hours after our son was born and were told he had Down syndrome and then were read this great big list of any and everything that could be wrong with him. It was so overwhelming. I wish we had been told all the wonderful things about Ds as well. Great post!!

JTT said...

Better than all of these are the hugs!

mccunesgirl said...

Thank you so much for this list I couldnt agree more. Right now I am sitting her with a 5 year old trying to explain cunkins(pumpkins) to me. I think he is wanting to paint it black.

Sully said...

I have not been fortunate enough to personally know anyone with Ds. I do however run into a few people with Ds out in public and they give me hugs. They make my day every time. Sometimes you just need a hug.

A benefit of have a child with Ds is knowing that he/she will spread smiles wherever they go.